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Skip to 0 minutes and 8 seconds Now, as we age, of course, we’re more likely to develop conditions that are associated with pain. If you or I developed a condition with pain, we’re going to be able to tell people about it and seek help. But if we were then to develop dementia, then we may well find ourselves in a situation where we’re experiencing pain, but we’re not able to put that into words or summon help.

Skip to 0 minutes and 35 seconds Now this may mean that, if we develop pain, then that goes unrecognised and untreated. It’s a real problem. So we know that doctors are quite poor at estimating how much pain somebody is experiencing, particularly if they only rely on asking the person themself about the possibility of pain.

Skip to 1 minute and 0 seconds Now, if a person with advanced dementia is known to have one or more painful conditions, then it can be really helpful for those looking after the person to speak with somebody who knows this person very well and to ask them how do they know if this person is in pain. Have they noticed certain changes in the person’s behaviour that they’ve learned might indicate that the person is in pain? And actually, getting a detailed description of this and recording it clearly can be helpful. So for example, the loved one might say that the person has got severe arthritis. And when it’s particularly bad, what they’ve noticed is that the person becomes withdrawn.

Skip to 1 minute and 43 seconds They may become uncharacteristically hostile when people are trying to help them to dress or wash. And they also notice that she loses her appetite. I think another useful rule of thumb is to always consider the possibility of pain if there’s an unexplained change in somebody’s behaviour. So for example, if somebody becomes very distressed for a period, or they become agitated and can’t sit still, or you just notice that the person, someone who’s usually quite chatty and sociable, becomes very withdrawn and appears somewhat miserable, those may be indicators that somebody is in pain. And so it can be helpful to always consider pain when there’s a change of behaviour.

Skip to 2 minutes and 30 seconds I think the other thing that can help to help people to detect pain is to get a careful account from the people who are actually doing the day-to-day care. And the sorts of questions to ask might be, when you’re helping this person to get dressed or to bathe, do you ever notice that the person seems to be guarding a part of the body or holding a part of the body. Would you ever notice some grimacing when certain parts of the body are moved? And the person best placed to know that are the care staff who were looking after the person day in and day out.

Skip to 3 minutes and 14 seconds Like many things in life, I think prevention is better than the cure. And there are quite a number of fairly straightforward things that can be done to help to prevent pain for people with dementia. So for example, having a detailed understanding of somebody’s past medical history and any painful conditions that they might have and ensuring that they receive the proper treatment for that is likely to reduce pain. Good care is also likely to reduce pain. So for example, if someone is in a care home, good care may prevent the person from develop– will prevent the person from developing a pressure sore, which can be very painful.

Skip to 3 minutes and 56 seconds Something that is often missed is the importance of good mouth hygiene and dental care. So I see quite a number of people who are in pain. And when you look into it, it’s probably because they’ve got dental decay.

Managing pain

Pain may be caused by long term health conditions, or new pain may be caused by common complaints such as headaches or constipation, or an injury such as a fall. Letting people know about pain and discomfort can sometimes be challenging for the person with dementia.

Dr Christopher Massey explains how to manage pain as dementia progresses. We asked him about:

  • communicating pain
  • identifying pain
  • preventing pain

You will also hear some of his tips for those providing support.

You may hear some unfamiliar words or terms in this video. If there are terms that you are unfamiliar with do have a look in the course glossary.

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This video is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University